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Data-sharing network to give assist to children’s health

seattle_childrens_detailDerek Streat, father of a 6-year-old girl who had a kidney transplant in 2010, has a very personal reason to help Seattle Children’s connect with other pediatric hospitals around the country.

He sees a day when doctors looking for the best treatment for a patient could study medical records for hundreds or thousands of similar patients at hospitals across the country.

That could help identify ideal levels of anti-rejection medications for kids such as his daughter — crucial because too little and her kidney is rejected, but too much and the medication becomes toxic to her kidney.

Streat’s wish has just received a $7 million kick-start. Over the next 18 months, a grant from the Patient-Centered Outcomes Research Institute (PCORI), a federally funded nonprofit, will help connect Seattle Children’s with seven other pediatric hospitals to create a national network of patient data.

The aim is not only to help find better treatments for children but to make it easier for researchers to enroll patients in studies and speed up research projects.

“At heart, it’s really pretty simple — it’s sharing data and doing it in a privacy-protected way,” says Streat, a member of an advisory group that has helped Children’s with the grant.

With the eight hospitals combined, the databank will contain patient information from well over 1 million children, said Dr. Mark Del Beccaro, a researcher, emergency-department physician and vice president of medical affairs at Seattle Children’s.

While some other networks have begun to share patient information, Del Beccaro said this is a first for children’s data. “Nobody has been able to do this in the past ­— ever.”

Click here to read more from this January 5, 2013 Seattle Times article by Carol M. Ostrom

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